Two Poems

Post Op

Then I awoke from dark dreamless Anesthesia sleep

Then the loud voices came back calling

Then the blurred images started floating by

Then I slipped in and out this new world

Then I could sense but could not feel

Then the pain returned

Then the muscles fired

Then the hunger consumed me

What world is this that I awoke to

Tis a world without trust

Tis a world without faith

Tis a world without honor

A world bankrupted by consent forms

A world of hungry superbugs that feast on my shattered arm

I thought they had a conscience but I was wrong

I thought they had a soul but how could they

A Corporation is merely a man made virus

A Virus bent on survival at any cost

Even if the cost is those who trusted them

My Nightmare continues 24/7

Lord how I wish I could dream again

But those unconscious hours are gone forever

But that was 2005 and this is Ten

The world has changed a bit since then

Today is filled with reports and initiatives

Today is talk of stimulus and recovery

Tis a world in search of hope

Yet hope lies not in Institutions

Hope lies not in Corporations

Hope lies not in Regulations

Hope lies in caring Nurses and Physicians

Who care enough to do it right

It took some time but I dream at night

I dream of a day not far from now

When infections only live in ancient poems

Kerry O’Connell, 2010

*****

Surgical Sex

Where else do strangers invade your body protected by mere millimeters of latex

Great is the hope that the brief intercourse will relieve the inner pain

But Surgery and Sex always have a price

The minimum price is a scar

The customary price is an infection

The maximum price is your life

So don’t engage in either lightly

One must always be willing to live with or die by the “unexpected outcomes”

Kerry O’Connell, 2006

Technology, or Why the Three Little Pigs were Misinformed

As an engineer, I have always placed far more faith in technology than in people. Many in the brave new world of “evidenced-based medicine” feel the same. But sometimes simple “people solutions” work where nothing else will.

I live in a jungle of pine trees at 8,500 feet above sea level, 40 miles southwest of Denver.

It is a very beautiful place, but every resident’s worst fear  is forest fires that can destroy your home and your view before you can lift a finger to stop them. This is a story of two radically different approaches to the problem of forest fires.

Joe was an engineer who built his dream home in a valley southwest of Pine, Colorado.

He fully recognized the danger of forest fires and applied his best engineering to the problem. For starters, he built his house out of concrete instead of wood. He roofed it with concrete tiles. As extra security he installed fire sprinklers on the roof in addition to inside the rooms. To feed the fire protection system, he installed a 10,000-gallon cistern and electric fire pump. Knowing that pumps are worthless when the power goes out, he installed a diesel-powered emergency generator. Joe’s insurance company loved him and gave him their lowest rate.  In the summer of 2000, the High Meadow Fire roared through Joe’s valley. Unfortunately the fire was so intense that it sucked most of the oxygen out of the air and Joe’s fire pump wouldn’t start. The intense heat radiated through his windows, setting the drapes and furnishings on fire. Joe’s dream house burned from the inside out.

My friend Rodney was a Cajun surveyor who worked for us back then, who also built his dream house in the little town of Westcreek. Now Rodney had spent a little time in engineering school but never quite graduated. He was a very clever, very likeable Cajun who was positive no matter what crisis was brewing. In 2004, the Hayman Fire came roaring through the Platte Valley. Rodney rushed home as soon as the fire broke out. For the first two days he ran bulldozers for the county, building fire lines. On day 3 the federal firefighters showed up in force to try to save the day. They immediately shut down all the county operations. Rodney was dejected but not beat. His wood frame house sat high on a hill with a great view of the entire valley, so Rodney volunteered the use of his home as a federal fire command center. For the next three days Rodney fed the firefighters all the steaks and beer they could eat. On day 7, the wind turned towards Rodney and he was ordered to evacuate for the third time that week. On his way down the mountain with his valuables and animals in his truck he met a large crew of federal firefighters. They stopped briefly and said, “Don’t worry, Rodney. We will save your place!” When they got to Rodney’s house they set a backfire on the uphill side and circled the downhill side with their trucks. Rodney only lost 13 trees. His neighbors weren’t so lucky.

After three years of medical research I have come to believe that a patient’s best tool for receiving high-quality care is to treat your medical providers as my friend Rodney did. Get to know them before you go in for surgery, treat them with kindness and respect, put yourself in their Crocs, and watch out for their needs. Imagine how difficult it must be to face a steady stream of complete strangers every day with a bewildering number of serious health problems, knowing that your simplest mistakes can cripple or kill them. When you see something they might be doing wrong, gently remind them in a kind way. Much of what separates good care from poor care is how much time the staff is willing to give you. Being human, they will naturally spend more time with the fun, kind patients than with the angry, bitter ones.

One of the benefits of working on Colorado’s infection reporting committee is that I get to know the top infection prevention professionals in all the major hospitals. I cannot think of any better friends to have when you are rolling into an operating room. Patient safety is far more than systems, slogans, procedures, and checklists. It really comes down to two people putting aside their own interests and finding the courage to help cure each other.

Kerry O’Connell, June 2008

Consuming Compassion

One of the first things we learn as science students is that for every action there is an equal and opposite reaction. Compassion is the equal and opposite reaction to human suffering. Whether it is Columbine, 9/11, Katrina, or a schoolhouse in Pennsylvania, the post-tragedy outpouring of compassion boggles the imagination and dwarfs the evil. Compassion is our most human emotion and yet it is also our most spiritual. It truly is the image of God.

“Compassion is something I have a lot of, because I’ve been through a lot of pain in my life. Anybody who has suffered a lot of pain has a lot of compassion.”

                                                                                                                – Johnny Cash

Over the course of history our societies and religions have sought to abolish human suffering. But without pain and suffering, would compassion exist?

When you think about it, suffering comes from four primary sources:

1. Our fellow humans                          Crime, war, neglect, poverty, starvation.                       (the largest category)

2. Our physical limitations                 Accidents, illness, and the inevitable                                                                                                  deaths of those we cherish.

3. Nature                                                Natural disasters, extreme weather, an                                                                                            ever-changing planet.

4. Ourselves                                          Desires, fears, doubt, selfishness.

Buddhists believe that through devout Buddhist practice one can eliminate suffering. Imagine a world where we all grew to that level and wiped out our evil deeds and inner demons. It would be a peaceful, amazing place but we would still have suffering from our physical limitations and nature. Suffering is an integral, unavoidable part of life. Evaluating our lives (or God) based on freedom from suffering is very similar to evaluating our children’s schools based on the quality of their recess periods. The most important, most unforgettable lessons in life are a direct result of suffering.

Dr. Viktor Frankl developed his theory of logotherapy while suffering in a concentration camp. His profound belief was that we can achieve true meaning in life in three ways: through great love, through great work, or through great suffering. Personally, I believe that great suffering creates great love/compassion which in turn produces great work. Thus some are blessed to experience all three in their short time on this earth.

Both Christianity and Buddhism share the concept of renunciation: that to advance to a higher spiritual state and eliminate self-inflicted suffering, we must renounce our earthly desires, possessions, and ways. What they don’t mention is that in the aftermath of great suffering your old desires and life become quite meaningless all by themselves and you become obsessed with a need to help others, an all-consuming compassion. It is a great gift from God that allows us to heal ourselves and a very small part of the world around us. Thus a champion, an activist, or an occasional fanatic is born. It is a very meaningful vocation, but being the change you wish to see is not easy. Changing established norms is frustrating and often depressing when progress is ever so slow. Witnessing cruelty and indifference is much harder for a compassionate being. Well-meaning friends and relatives advise you to just get over it and return to your old life, not realizing that God has sent you down a new one-way path and U-turns are not allowed. Yet infrequent rewards do come at the most unexpected times, from the most unexpected people.

To confirm my thoughts I drafted a simple “test question” and sent it to some people I have met who have profoundly suffered in a wide variety of ways. The question was, “What differentiates the inspired wounded from the bitter wounded?” These are their amazing responses:

Helen from North Carolina:

“Interesting, I don’t think of anyone I have met as bitter.  Some of them are very cynical, however.  Almost always, that is based on experiences of being lied to and deceived in a manner that is quite calculating.  Some of them are profoundly disabled and waiting to die from a system that seems indifferent to their injuries and refuses to give them meaningful medical treatment.

That’s what I see.  It’s very frightening.  And yet I don’t see anyone who has given up on the hope – however faint – that someday things may be better.”

“It would be hard to do anything else,” says Helen of her ongoing patient activism. “You’re sort of driven by the Furies.”

Kathy from New Zealand:

“What differentiates the Inspired Wounded from the Bitter Wounded?…For me it was self love – the decision that this did NOT have to be a tragedy, that I could create something positive out of it. From that it simply followed that bitterness would eat ME alive and would be certain to make it a tragedy.”

Kim from Minnesota:

“I loved the inspired wounded vs. bitter wounded.  I often ask myself this too. What makes someone bitter as is evident by my mother-in-law.

For me, it’s my strong faith.  I remember sitting on the floor after Woody died grabbing my heart crying over and over, ‘God take my pain and use it.  It does me no good.’   Never did I imagine this was the course that it would take, but it has helped me tremendously make peace with my husband’s tragic death.

Also, when we were throwing Woody’s ashes out overLake Michigan, a red bible with gold letters, ‘The Holy Bible’ floated right as my brother-in-law and I were standing at edge of the boat wondering how we got here.  Ever since then, I have to believe there is a greater purpose for my life (and Woody’s death).”

Neil from Colorado:

“Here is my best shot on this question. The inspired wounded have a reason for living.  They have found a context for their suffering which gives their lives meaning.  Their suffering is not in vain.”

Nicole from Colorado:

“Personally I believe that both the inspired wounded and the bitter wounded share the same amount of mental and emotional intensity, however I think that this intensity originates from two very different sources.

It seems the inspired wounded go through a mental and emotional process that helps create an attitude where they no longer view their selves as a useless victim and now see their selves as a representative of suffering who has overcome such pain.  With the strength and sense of fullness and I emphasize fullness because they elicit an understanding of nobility which allows them to motivate change in others who have faced tragedy.  They can guide people to a path of reverent emotions.  Whereas, the bitter wounded draw from a mental and emotional state of emptiness that essentially impairs personal growth.  They feed such perceptions that they lose sight of self worth and become unaware of how valuable they could be to others.  While remaining in this state of selfishness they slowly self destruct.

I think it’s safe to say that when one does undergo an experience of affliction and has to endure suffering you should view it as a building block in life, a new phase of existence that is just beginning.  Not seeing it as leftover pieces of ruin from your once sound entity.”

Susan from Chicago:

“I agree with all of the comments and would like to add that I often see ‘productive’ patients as well as ‘destructive’ patients.  I believe part of the differentiation is the availability of pathways to patients to make a difference.  I have seen patients evolve from very angry to productive when given a chance to be involved in creating solutions or even when they get a chance to tell their stories.  Our system is so very closed that it breeds patients who get stuck in bitterness.  So, I am hopeful that we can all together co-create a healthcare system where patients are indeed welcome to participate.”

Mathy from Maryland:

“The Inspired Wounded takes what God has dealt him/her and moves forward. Although it is too late to change the life direction of the wounded, that person moves forward in a proactive way to ensure that others will not be subjected to the same pain. If there was no warning prior to the person’s pain or loss, then that person will go to great lengths to prevent the same wounds from happening to other innocent people by making sure that their warning is heard loud and clear by as many other people as possible. The bitter wounded take a ‘Poor Me’ approach and either do nothing, withdrawing from the world as they knew it, or get by on the sympathy of others. These people never get over being the victim and want to be pitied, accepting that change will occur because they have been wronged, but make no personal contribution to improve the atrocities. They are correct in their assumption that life is not always fair, but do nothing to bring about positive change for themselves or others. They will frequently try to jump on the coattails of those promoting positive change and expect that glory. Their bitterness creates a downward spiral for others, not only in their immediate families, but in their communities. They may end up being alienated because no one knows what to say to them.

I am happy to say that I am an ‘inspired wounded.’ Nothing will bring back my little girl, but it feels good knowing that by being a voice, I have played some small part in creating a safer, healthier outlook for children.”

 Kate from California:

“Ordinary people can accomplish the extraordinary by focusing on what they have, not what they don’t, what they want, not what they don’t want and what they can do, not what they can’t.”

Diane from South Carolina:

“1)     The difference in my mind is simply getting to the place where you want to SERVE more than you want to stay angry!

2)      What helped me, was the fact that watching Willie die, was beyond my ability to fix it so to speak, all I could do was ask God to help him thru it peacefully and have someone there to keep him company – so that he didn’t have to cross that threshold alone. Willie was one of a kind.

Bitterness eats away at the individual(s) who is bitter about anything and everything; I don’t’ have time to be bitter, I still get angry at times, I still cry at times and there are times I want to break dishes or what ever – but my place is here on my knees begging my heavenly father to please protect the patient next in line right now.”

Michael from Maryland:

“Even the ‘inspired wounded’ have a measure of bitterness. The inspired are usually more educated on the cause and are therefore more focused on how to fight. Also, while I believe that the pain is always there, time helps make it a little more manageable. But even achieving great success in the fight does not remove the pain and some, sadly, will remain in their bitterness. There is much more that could be said on this profound question.”

*****

A year ago I looked at inspiration versus bitterness as an either/or situation, but after talking to many survivors I believe it is a process much like grieving that begins with shock, moves into anger, and eventually can become inspiration. It is not a linear journey as we often get into circular patterns of bitterness and inspiration. It is a very difficult journey shared with many others.

“People are wonderfully complex and absolutely unique, and thus work through suffering and loss in a wide variety of ways. There is no one right answer for it is a personal journey on a dark uncharted path without a compass or a guide. We all wander off the path but eventually we find the light.”

                                                                                                                – Viktor Frankl

Dr. Frankl also felt that the challenge in this life is to live our thoughts instead of merely putting them on paper. I assure you that the champion/heroes above do just that every day!

“Pain provides the opportunity for heroism; the opportunity is seized with surprising frequency!”                                     

                                                                                                              – C.S. Lewis

All-consuming compassion is all that really matters in this brief experience we call life.

Kerry O’Connell  1/28/08

Moral Ambivalence

Two years ago a tragic fall and crushed arm started a long journey through the best and worst of the world of healthcare. Before the journey I, like most Americans, had childlike faith in the gods we call doctors. Our family physician, Dr. Roland, is one of the finest examples anyone can imagine. In addition to spending a month in Africa every year tending the needs of the poor, every day he truly heals his patients’ souls as well as their ailments. His advice to me after an orthopedic surgeon destroyed my radial nerve – causing far more damage than the fall ever did – was to have a nerve graft done immediately but far more importantly, to find a way to forgive the Doctor/God who had eternally destroyed my left hand.

Little did I know that as hard as the next seven surgeries would be, forgiving a Doctor/God would be infinitely more difficult.

My journey exposed me many of the finest hand surgeons in the United States: the likes of Lord Jupiter of Harvard, Lord Hanel of Seattle, Lord Viola of Vail, and the Great Lord Morrey of The Mayo Clinic.

As I told them my sad tale, the only thing you could see in their eyes was fear, quite an unexpected response from a God. Later I would learn that I was their worst nightmare, an eternally damaged patient who knew it. Their fear is so ingrained that it totally precludes any response of sympathy, anger, or disgust. They reside in a world without moral absolutes. It is a foggy world of outcomes – some quite miraculous, others quite tragic, but none that are either right or wrong and certainly not anyone’s fault. It is this moral ambivalence that makes Doctor/Gods so very difficult to forgive. Theirs is a strange world where you pledge your life to helping patients but spend most of your career working to preserve the God-like myth. The myth is perpetuated by quickly taking credit for the miracles and immediately burying the tragedies. Myths are a costly addiction for the Doctor/Gods for they give birth to expectations that can never be met. However, for patients, burying the truth is far more than costly. One of our oldest, most basic survival instincts is to understand the why, the cause of tragedy. Nietzsche wrote, “He who has a why to live for can bear with almost any how!” As a victim of medical error, I know first-hand that the questions of “Why?” are every bit as tortuous as the physical results of the mistake. Your mind constantly wonders, “Did I just hire the wrong Doctor/God, did I just schedule my care on a bad day, or the worst of all, is the real God very angry with me?” Perpetuation of the myth by burying the truth leaves these agonizing questions unanswered for the rest of our time on this earth. Jerry Sittser observed that our greatest fears in life are the totally random tragedies that we cannot predict, let alone control. Doctor/Gods by their silence make medical errors our greatest fear.

I believe that understanding why is the crucial first step towards ultimate forgiveness. All of us are highly imperfect beings who make mistakes every day. The truth is never hard to understand. Doctor/Gods’ greatest weakness is that they don’t understand that true forgiveness transforms both parties. It is a growth experience far more valuable than maintaining any mythic reputation. What can be done to dispel the myth? Our most valuable tool may be to be absolutely honest with the Doctor/Gods and strongly encourage them to be honest with us. When you encounter honesty, cherish it, praise it, and tell the world about it, for true honesty is quite rare.

The two things that all Doctor/Gods should learn early in their profession are that no amount of cash can replace competent compassionate care and that honesty can heal the soul when nothing can heal the body!

Last month was the much anticipated/dreaded meeting with my original Doctor/God. As much as I pressed, he didn’t want to talk about the details of what went wrong. So I explained what I thought happened. He hung his head and nodded a lot. He did admit that a lot of people messed up – badly – and said that it was probably not an EBI Technology issue but a national-level EBI problem (shipping the wrong parts). He explained that it was the second worst thing that has ever happened to him in his career, and that he lost a lot of sleep over me. His practice doesn’t do any more plunge incisions and will never use another elbow fixator. The doctor excitedly explained a new system of injecting botox into the elbow to prevent the buildup of scar tissue and heterotopic ossification but he didn’t seem interested at all in educating the orthopedic world about my problem, which drives me absolutely insane.

I told him my theory that God caused his mental lapse to teach me a few things about life. He said God taught him a lot also. Though I still didn’t know why this tragedy happened, I told him that I forgave him; he hugged me. The attorneys were touched (really). I truly hope that he feels better.

I cried all the way up the mountain on the way home for no explainable reason, though it was kind of symbolic as I cried coming down the mountain after the dislocation in October 2004 and cried all the way to Vail on the August 2005 infection cruise.  Blurry mountain driving: quite a learning experience.

Kerry O’Connell   2/9/07

Sympathy/Empathy

Sympathy/empathy. Two words that sound alike, look alike, and are often interchanged without thought. It is hard to believe that I spent 48 years on this earth before I understood how radically different these two similar words really are. The event that brought this revelation into painfully clear focus was a split-second duel with gravity on a wonderfully bright October morning last year. Most shattered elbows can hardly be characterized as life-changing experiences. This one led to tragically disappointing medical procedures and months of therapy that have accomplished little for my mangled limb but restored my faith in people beyond comprehension.

I believe that empathy is the most preciously cherished form of all human communication. Empathy is the gravitational force that bonds souls of the most diverse people on earth into lifetime friends. The differences with its weaker cousin sympathy are too many to list but here are a few that clarify the concept.

Sympathy                                                                   Empathy

Can be purchased at Hallmark                                   Cannot be purchased at any price

Given by many                                                             Craved by many

Minimal emotional investment by the giver            Requires great emotional revelation by                                                                                                the giver

Leaves you indifferent                                                Leaves you warm

Brief pain relief                                                            Lasting healing

Quickly forgotten                                                        Relished forever

Understood                                                                  Experienced

Offered                                                                         Shared

Abundant                                                                     Most rare

Expected                                                                      Unexpected

Learned                                                                       Intuitive

Easy                                                                             Difficult

Shallow                                                                        Deep

Acknowledges                                                            Accepts

Mostly talking                                                            Mostly listening

Tries to solve                                                              Relates

Often religious                                                            Always spiritual

Past tense                                                                   Present tense

The symptom                                                            The cure

Safe                                                                              Risky

Polite                                                                           Real

Too much can be annoying                                      Can’t have enough

Manly                                                                          Godly

My challenge to you is to watch carefully for souls who have lost their own duels with gravity on the endless rocks in life’s road. If you have fallen on that same rock tell them. If not, help them connect with someone else who has tripped on that rock. I guarantee your efforts will be rewarded tenfold and remembered forever.

Kerry O’Connell    7/6/2005

Patient Safety 502

Patient safety is one of the newest fields that you can you can get a masters degree in.

A traditional program is available through Northwestern University, or you can get an online degree through the University of Illinois. (Chicago is a really safe place!) I received my degree the hard way on the front lines of the American healthcare system. My real-life four-year graduate program included courses in:

• What to Do When the Hospital Overbills You $30,000
• Rebuilding Arms after Major Surgical Errors
• Surviving Deep MRSE Infections
• Medically Induced Bankruptcy
• The Joys of Arbitration
• Trying to Get a $3 Billion Orthopedic Device Manufacturer to Care
• Legal Malpractice and the Tort(ure) System
• Patient Safety Speaking Skills
• How to Pass Medical Legislation
• Leading a State Infection Reporting Committee

The program was intense, mostly self-taught and always very challenging. Students like me find out quickly that healthcare is a vast labyrinth of professional organizations, unwritten standards, frustrating bureaucracies, and ultra-complex technology. I learned new things every day but the really important lessons were:

Blind Faith

 I, like most patients, naively started the program with total blind faith in my Doctor/God. You worry about asking too many questions of this very busy, very important deity who is going to make your damaged arm like new. What I learned was that on a good day Doctor/Gods are just barely more talented than most patients. They are extremely poor listeners/communicators, they have only average memories, and due to their frantic lifestyle haven’t had time to read the latest research on your condition. Though they will never admit it, they desperately need our help.

Transparency

Patients are accustomed to dealing with their very honest, very caring, very transparent family doctors.  Sadly, when good care turns bad a totally different world emerges. “The Wall of Silence” is very real: honesty disappears, and the planet turns brutal. To survive in the world of Medically Induced Trauma patients must make themselves absolutely likeable, obsessively persistent, fearless, and be willing to devote most of their spare time to researching their care.

Conservative Treatment

Every patient should understand the term “conservative treatment,” which is generally defined as “the very least amount of medicine that produces the highest probability of a good to excellent outcome.”  Doctors don’t always prescribe the most conservative plan for your care. Sometimes they offer the most expedient treatment, or the most profitable treatment, or the latest high-tech treatment which they are dying to try out. Patients must always remember to ask multiple doctors, “What is the most conservative treatment plan for my condition?”

The Standard of Care

I, like most people, assumed that there was some huge volume of very technical books in every major university’s library that spells out in explicit detail the current state-of-the-art treatment plan for every known medical condition. Big surprise: it doesn’t exist and probably never will exist. I did learn at dinner one night with my last doctor that there are several “standards of care.” My doctor takes care of the Colorado Rockies and US ski team athletes. I remarked that it must be a really bad day when one of those athletes gets infected. He responded, “Oh, they never get infections.” “Impossible,” I replied. He then explained that the superstars don’t get scheduled for surgery unless the hospital has been infection-free for weeks. Stars go in first thing in the morning, and they triple-check that every medical detail is perfect. I found that there are at least three standards of care for any given procedure: the Superstar Standard, the everyday That’s How I Learned It in Medical School Standard, and the Absolute Least Care that Anyone Has Ever Documented Standard, which the malpractice defense attorneys present to juries. I will never understand the stack of letters from my hospital that clearly state that giving me a life-threatening infection met someone’s “standard of care.” Without detailed research you will never know what standard of care you are receiving.

Expectations/Accountability

Two hundred years ago, most people who were sick enough that their families would take them and the family treasure to see the doctor simply died. The few who did live were forever indebted to their Doctor/God. Today we expect them to be able to immediately diagnose and quickly cure every known problem, many of which are self-inflicted. Doctors appear fearless, but in reality they fully understand how extremely fragile human life is and know first-hand how the smallest mistakes can wipe out a beautiful life. Our system places total responsibility on the Doctor/God. He is responsible for the patient adhering to instructions, for every person’s performance in the operating room, even for faulty engineering and design of medical devices.

It is called the “captain of the ship doctrine.” Unfortunately medicine has become so complex that it overwhelms the captain’s abilities. One day I asked my last doctor how my first doctor could have lied to me for four and a half months. I will never forget his response. He said, “Kerry, we harm patients and lie about it every day! My colleagues call me all the time for advice on how to fix their mistakes. Most patients never figure it out.” The system is broken! Much like the complexity of flying an airliner the responsibility needs to be spread beyond the captain/doctor to the entire team, including the patient. My experience is that the very best care is when doctors seek the opinions of their peers before the treatment plan is implemented. The humble docs are by far the best docs.

Money Matters

As smart as doctors are, this one simple question stumped them every single time: “What will this surgery or device cost me?” I would even try to make it easier by limiting the question to, “Ignoring all the other players, what is your fee to conduct this surgery?” Hard to believe that guys who have their stock prices on their cell phones don’t know how much they are making every time they roll into the OR. A few weeks after surgery I would receive astounding statements from Aetna. Healthcare is the only business I know of that gets away with charging whatever the market will bear without ever disclosing the price to the consumer.

I analyzed my first detailed hospital bill and discovered that the stainless steel elbow hinge that they bolted to my arm cost over $50,000. A long letter to the hospital CEO resulted in an enlightening meeting with the hospital’s CFO. The apologetic CFO explained the mysteries of hospital bills to me. Hospitals basically take real costs and mark them up two ways. Major items for which they have negotiated rates with the insurance carriers are marked up 300%; the insurance companies cut them in half thus the hospital makes about 50% gross profit. Little items from Kleenex to miscellaneous orthopedic hardware are marked up 1,000%, which the insurance carriers again cut in half, reducing markup to about 400%. The blended combination of these two markups allows the hospital to make 10% to 12% net profit after deducting overhead and taxes. It is a very lucrative business. Sometimes, as in my case, the billing staff mistakenly enters items at 1,000% markup instead of 300% markup and insurance carriers pay the inflated bills. Every patient should always request detailed breakdowns and thoroughly review the charges. My work resulted in a refund check to Aetna of more than $30,000.

System Overhaul

Sometimes systems evolve so quickly that their creators have to stop and totally redesign their pride and joy. Healthcare has reached that point. Reform isn’t enough; complete overhaul is in order.  My overhaul plan would include:

Restoring Trust – The past three decades of burying mistakes have destroyed the public’s trust in healthcare. I agree with Don Berwick that complete and total disclosure is the only cure. Disclosure must include internal hospital investigations, peer reviews, operating room dictation tapes, and virtually any conversation or information associated with the patient’s care. Morally it is the right thing to do; secrecy causes immeasurable emotional harm to patients and families, and it is the only way that we will identify the true magnitude of the problem. A key component of disclosure/transparency is putting audio/video recording into operating rooms. Pretty astounding to think that our society spends lots of money recording motorists speeding and running stop lights but when they have your heart sitting on the table we rely on foggy human recollection. Don will probably disagree with me but the only way meaningful disclosure will happen is through very strong national legislation.

Accountability – I learned last year that “baby in the snow stories” are medical disasters that inspire legislation (sometimes good, sometimes bad). Healthcare has an abundance of “naked baby in the snow stories.” My friend Helen Haskell sends me at least three sad stories every day. A key way to reduce the number of tragedies and bad legislation is to create a nationwide system for licensing doctors. We must keep the incompetent doctors from jumping to another state and help them find alternative means of employment. Hand in hand with licensing should be a nationwide system of malpractice insurance for both hospitals and doctors. Both know that under total disclosure the number of errors we currently experience will bankrupt the system. Two things must happen. We must get the attorneys and the courts out of the system! The billions of dollars utterly wasted on attorneys’ fees must get distributed to victims. Secondly, victims must accept that just because your slightly above average very human doctor screws up, you don’t get to retire. We don’t go to court every time someone runs into our cars.  It is insane that the only way to get compensated for medical errors in this country is to file a lawsuit.

The drug and medical device industry is especially troubling. Maybe someday I will understand the Supreme Court’s logic in letting pharmaceutical and medical device manufacturers make billions of dollars from the people their products help and then saddling the unlucky souls who are harmed with the full financial consequences of the loss. My alternative to preemption is simple:

1. All drug and medical device clinical trials are conducted by independent third parties (a medical version of Consumers Union). Trials are paid for by the FDA with funds from the manufacturers.
2. The FDA evaluates the data and the risk factors to predict the number of patients who might be harmed.
3. The risk factor establishes a percentage of profits that are put aside in a government-administered fund to compensate victims or their families.
4. After drugs and devices create a loss history, the risk factors are modified up or down  to keep the fund solvent.

Imagine no attorneys, no class actions – just unfortunate people getting quick financial help so they can try to put their lives back together.

Infection Prevention – Please stop arguing about the percentage of infections that are not preventable! Can you picture fireman huddled outside a burning apartment building debating if they are going to be able to save 98% or maybe just 95% of the residents? Now is the time for extreme action. I truly believe that infections are not a scientific problem; they are a financial problem. Reducing infection rates from 1.5% to zero is going to take an enormous amount of money. Currently we pay healthcare $4 billion a year to treat infections, but are not willing to pay anything to prevent them. We have to change the paradigm to pay sizeable bonuses for every patient who doesn’t get infected and, conversely, make healthcare absorb the cost of treating those who do become infected. Extreme measures such as building entire patient wings to computer chip clean-room standards; excluding visitors; and testing every patient and healthcare worker every day will be required to get to zero.

Medical Research – In reading hundreds of studies from major medical journals I found that the vast majority are very short in duration and have very small numbers of cases. The two factors that drive this issue are severe lack of funding and the complete inability to collect very detailed case information from across the country. We must find a way to protect patient privacy and still get the information into very large databases so that researchers can truly establish a current standard of care.

Medical Education – I coined a term called “tripathy” meaning to simultaneously treat a patient’s physical, emotional, and spiritual needs. We must teach young doctors the lost arts of empathy and compassion. Detached concern simply does not work; it is fundamentally inhumane. Compassion will heal problems that evidence and science can never cure.

I didn’t get a diploma for my real-life masters program but I do have 42 inches of really cool zipper scars which are almost as meaningful. The caregivers I have met over the past four years are absolutely wonderful, but they are also extremely scared and profoundly hurting. They need our support and total commitment to overhaul the very broken system that they struggle with every day. As patients and fellow human beings we need to quit whining and demanding miracles and get involved in fixing the issues.  Our survival depends on it.

Kerry O’Connell, December 2008

Shared Suffering

Having experienced serious surgical mishaps by two different surgeons over a ten-month period of time, I have thought a lot about what would make injured patients feel better and punishment was not the answer.

I believe the harshest, direst experience on this earth is to suffer alone! Yet one of the greatest, most bonding experiences people can have is shared suffering. Consider what happens to most patients after a medical error:

Stage 1.  Provider Denial – Patient is alone in his pain and his fear of his final outcome.

Stage 2.  Provider Limited Admission – Patient is told that a bad outcome occurred but he is a one-in-a-million rare occurrence. Again the patient is led to believe that he is alone and extremely unlucky.

Stage 3.  Attorneys Get Involved – Now the wall of silence goes up and you are totally alone in trying to understand what really happened and how you can put your life back together.

After years of suffering through our incredibly brutal tort(ure) system I finally had the chance to talk to the surgeon. The most meaningful words he spoke were the descriptions of how badly he suffered also from the event we shared in that OR. Finally, I was not alone! Doctors and nurses must be allowed and encouraged to share their heartbreak with the patients that they accidentally injure. By doing this we can avoid lifetimes of guilt and bitterness and both can learn and heal.

Medical schools will teach that the greatest feeling on earth is to bring a patient back from the brink of death. I believe that the greatest experience a doctor can have is to be unconditionally forgiven by a patient who was seriously harmed.

Kerry O’Connell  9/9/2010